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Wednesday, April 29, 2009

Carly Simon's song always pops into my head when I think about anything that could be remotely attributed to conceit.

A recent letter reminded me of my experience, which I'll share in a moment. For now, here's the letter:

Dear FG: (Fibro Gin)

I'm forty-two years of age and look like my mother who is sixty. I have noticed my age increasing three years for every one that has passed for the last five years. I was diagnosed with Fibromylgia six years ago. Premature aging is not on your symptoms list but I know I'm not the only one who has this problem with Fibromylgia.

Sincerely,Premature-Ager

Despite the "Dear Abby" tone of this letter, it is one of my favorites so far. So thank you "PA"!

As a 34-year-old dating a 20-year-old, no one freaks out about premature aging more than me! I have the eye cream I rub underneath my eyes on bad days, and all the face masks at night. And I don't care what anyone says, my nightly rituals work.

But why did I go from not caring to freaking out? It has very little to do with the age difference between me and my present beau. It has nearly everything to do with the fact that I WAS looking old. My eyes were puffy and dark one day and I couldn't remember how they got that way. It was gradual sometimes but dramatic on others. What the heck was going on with me??

Then I caught some weird reality show which had a girl hopped up on oxycontin and pictures of her this year and the year before. WOW! What a difference. Pain relievers were her thing. She had an injury from a car accident (if memory serves) and she just couldn't get off of them. When her doctor stopped prescribing she mail-ordered them or bought them from friends who stole them from their parents, etc.

Duh! Fibromates for the most part, are not addicts. We feel pain, we take pain killers, anti-depressants, muscle relaxers etc. Taking these medications is legitimate for us, unlike junkies. But why do we think that because we're not junkies we won't start to look like junkies on the same or similar meds?

Natural products do not work for all Fibromates, so does that mean that those who are in too much pain without chemical treatments are doomed to look twice their age? No.

So what can be done?

When I asked "P.A" in a follow-up letter how much chemical vs natural treatment she has, she said she doesn't take any natural products because they "did nothing for her".

This is a common answer and a respectable one. We often get so frustrated when we try something that could possibly work for us (after all it works for "so and so") that we turn our back on it and think on it bitterly. (I'm a classic case of this. Anti-depressants and I are not kissing-cousins.)

But vitamins should not be used and then discarded when they don't show results. Why?

Or body needs vitamins. They don't harm us to take them, they can only help, even if not noticeably.

If you are a Fibro Patient, and you take a list of meds, chances are you might start losing some of that glossy shine on your face and skin.

What to do? Everyone has a few home remedies they could probably offer here. Oatmeal face masks, cucumbers on the eyes, avocado lotion applied twice or maybe a citric face peel. If you have something you use that works well feel free to share it! For me it is less about the natural age-fighting concoctions and more about getting into the habit of using them.

First: Take vitamins! Vitamin E in moderation is so good for the skin but having a healthy intake of all vitamins is a good way to keep your visual age down.

Second: Drink a TON of water. Nothing hydrates your skin more than keeping your body hydrated. (Do not become overly obsessive, just up the intake when you notice problems with your skin. Gaining a bladder problem by over imbibing water is counter-productive.)

Third: Wash your face at night and in the morning. Use creams and lotions to keep your face from drying out. Peels, microderm abrasion treatment...whatever you find makes you FEEL good. Part of looking good is feeling like you look good as well so do what you find appeals to you. It can be a texture or scent or...whatever. With Fibro we rarely feel good about anything. Train yourself to feel good about your outside even when your insides are "The Suck!".

Lastly: Use all of the above to create a routine. And know when you really need to get serious by the amount of drugs you take.

My Vanity Journey:

I was looking older than I felt on my good 98% days. I figured out they were around the time of month where I got my migraines due to menstruation. Yay..thank you mother nature! I have to take narcotics because nothing else takes them away. But I'd start to look awful by day four. Big bags under my eyes, dark circles...sallow appearance, dull skin.

So one day I went out and spent 100.00 at Sally's Beauty and one of those stinky stores with all the lotion products. For four months I tried a little bit of this and that until I noticed I was looking better than I had in years!

Talk about doing the happy dance.

This might sound selfish and vain to some people, but for me if I not only feel like crap but look like crap, I'll get more depressed. Once I get more depressed I lose my ambition. I stop exercising, I stop going outside, and I stop taking vitamins. I get in that rut of "what's it all for??" and that is a dangerous place for a Fibromate to be!

Though I tease and call my concern over how I look vanity, I truly think of it as self preservation. I don't need to look sick to be sick because I don't need to prove how I feel. I know it.

When I look better I have more confidence and that helps me when facing doctors, oddly enough. "I feel pain so you need to fix me and no it is NOT all in my head."

Looking good has so many benefits, so it is OKAY to worry over premature aging. It is also okay not to care! I figure I should throw that in there in case anyone is thinking I'm saying that everyone has to look hot every day.

The powers know that I look like crap on a cracker many days a month, and I'm not going to obsess about it, I'm going to wait until I feel better and then start the anti-aging battle again.

All my best, My Beautiful Friends.Remember, there is more to beauty than just outside appearance, but there is nothing wrong with having a little bit of both!

Monday, April 27, 2009

Just a quick apology for falling down on the job lately. I've been getting a bunch of letters, my editing is taking up a lot of time, two projects are in completion, and my daughter has chicken pox! Gahhh.

At first we thought it was an allergic reaction to meds she was taking for a sinus infection. But when it worsened within six hours, we took her back to the doctor to have him basically say "oops, it is chicken pox". This is great considering we had taken her bowling and out to eat to get her mind off of the itchy allergic reaction she was having to her antibiotics!

Now that I know she has chicken pox, and will be closely watched day and night by me, (No sleep for me!) I'm thinking back to that little bowling trip and wondering...when will THAT pain kick in?

With Fibro, we deal with a lot of different types of pain, and one of the first indications for me that I had Fibromyalgia was the delayed reaction pain.

I was at an airport and I was lugging my heavy bags around on my shoulder for a good hour and a half. Two days later...I thought my arm was going to fall off!

I get a few letters that ask about delayed pain. The following was a letter I received last week.

Dear Gin,

I was wondering if you knew why I get severe pain that feels like I lift something when I don't. Any ideas why that happens?

Lucille

(How do I know this is a letter about delayed pain? Her P.S.)

PS: Did you ever get those tomatoes in? On Friday me and the kids made a garden.

To Lucille, and a few others who have asked this question in the past, No, I didn't get the tomatoes in.

Just kidding.

Why we experience delayed pain is often a subject of debate. There are many answers that I have read in research that ride the spectrum between blood flow slowing the response time to your brain (that's the non-medical jargon definition, lol) and something a little more complex that has to do with the state of your muscles. Chiropractors and general practitioners who know Fibro, often suggest conditioning your muscles.

After all, think about the type of people Fibromyalgia often effects. People who have had/or do have a debilitating illness, have been in a car accident, have had a baby, or have been in an extended state of depression throughout their life.

The one common denominator for all of the above Fibro Sufferers is the state of their muscles. No exercise or very little. Deteriorating muscle status. Fatigue and lack of energy that keeps the sufferer from exercising. When we can exercise...it hurts. Usually bad. And it sets us on a pattern of chaos.

For instance. I exercised daily for five minutes a day for a month. I lost weight, my fibro was nearly non-existent. And then I tried to up my workout. My neck and back killed me for a week and my flow was lost. Then I did that silly experiment to see just how effective vitamins were for me, and the month of March was hell!

I still suffer from Migraines due to my period now, but hopefully my vitamins will get me back on track again.

My point is, that one little muck up can throw a monkey wrench into our recovery/treatment. I should have pushed through the pain. Gone to a 2 minute work out or some such instead of baby myself and curl up in a pain ball.

But it is really...really...really hard to make yourself feel more pain with the vague promise of feeling better in the long run!

So for those of you who write me to tell me you do everything you can but can't exercise without pain, I do feel for you! Trust me. It is not an easy thing and if I have made it to sound as though it is, that is just my enthusiasm. I know it can feel good! But it has to feel bad first.

Okay, so back to the delayed reaction and why we get it, a friend of mine sent me a link to drcalrobbins.com. I'm looking forward to trying Chiropractic care again (this time with a better understanding of my own condition so I can look out for quacks) and found this little bit of information to be interesting.

I quote: "underuse of your muscles leads to a negative, detraining effect, which results in unfit muscles. Detrained, or unfit, muscles are more likely to become injured or damaged from exercise. This sort of muscle damage is commonly called microtrauma. All of us have probably experienced the effects of muscle microtrauma after exercising too vigorously. When microtrauma occurs, you experience delayed muscle pain that may not appear until 48 hours after exercising and may last 7 days. In addition to the pain, increased fatigue occurs, resulting in a lack of desire to participate in further physical activity until energy has been restored. It is common for anyone to experience the effects of microtrauma after too vigorous physical activity. Yet for people who have unfit muscles, these problems may develop after only slight exertion, such as routine day-to-day activities. Microtrauma may also result from overuse, or abuse, of certain muscles such as poor posture or damage caused by a blow or fall."

Ever since that shampoo company with the "Pro V" came out pretending they had invented something rare and fantastic for hair that gives it an edge...I've been skeptical about termanology.

What is to stop anyone from saying "I invented Pro FC, the secret ingredient in my Fibro Sufferer Supplement, which gives my product the edge you need to treat your Fibro successfully." Pro FC just just "Pro Fibro Cure" but if I market it in such a way to make it sound like an ingredient...I've just made a bucket of money on my BS.

Okay...I am really digressing here. LOL. I get so mad about scams and advertising!

Delayed pain is normal for Fibro. We experience it either because of blood flow to the brain or lazy limbs, or something in between who knows. All that matters is that we all know feeling pain a few days after a strenuous activity is not abnormal.

Sunday, April 19, 2009

Original post back in February. As requested I am reposting for the newer readers. I apolgoize for the delay, it has been a busy few days!

Take care, my friends,Gin

This list is posted on about.com but has been meshed with a couple of other claims to Fibro symptoms to try to make it even more complete. I love that website as some of you know. It also has a GREAT Fibro community ,though sometimes there are a few depressing people there. The Board Guide does her job well, so its a pleasant support group for the most part. Check them out: http://forums.about.com/n/pfx/forum.aspx?nav=messages&webtag=ab-chronicfatig

Without further ado, for your convenience, here's the "Monster Fibro Symptom List".

General Fibromyalgia Symptoms

Delayed reactions to physical exertion or stressful eventsOther family members with fibromyalgiaSweatsUnexplained weight gain or lossCravings for carbohydrate and chocolateHeadaches/Migraines

Muscle & Tissue-Related Fibromyalgia Symptoms

Pain that ranges from mild to severe, and may move around the bodyMorning stiffnessMuscle twitchesDiffuse swellingFibrocystic (lumpy, tender) breasts (as an overlapping condition)

Wednesday, April 15, 2009

One of the common symptoms of Fibromyalgia is, of course, the Fibro Fog.

One second you will be holding a gallon of milk, pouring out a glass and the next you're walking away from it as if you just decided to forget it.

In the last couple of days I have ruined two gallons of milk this way. One I left on my daughter's shelf in her room for some reason and another I walked away from some time last night to discover it this morning. Brilliant Gin!

I often talk about one of my favorite magic tricks that I'm good at performing. It is called the disappearing Vacuum trick. I vacuum out my car and then get in, and BAM...the vacuum disappears...right under one of my tires as I back out over it.

Easter can get interesting too. You hide eggs for your kids or grandkids to find and...lose some. That "getting warmer" game doesn't work so well when you can't remember where you hid the eggs. In the next few weeks the smell will help me find them!

As light-hearted as this post is today, there is a serious side to Fibro Fog that is no joke. The Medication factor. Did I just take more than I should have?

Poison Control knows me well. I am not afraid to call them and it is one of THE best services that is offered for free. I can't tell you how many times I've stood in stunned silence after taking a pill and thinking...I did this already. Or did I? CRAP!

By the way, Poison Control's number is 1(800)222-1222. There are online alternatives but, in my opinion, nothing beats a human telling you that you're going to be fine.

So...

How can we fight the Fibro Fog?

I've asked a few Fibromates at a Facebook group that question, and some of them had good ideas.

Kathy Chapin of Chigago uses a dry erase board to keep track of things she needs to do and activities for members in her home. She even has it color coded, each person having their own color to make it even easier!

Marty Tanner of Seattle has a dry erase board on her door as well that he kids can write things she needs to remember on it. And like me, she uses her phone often.

For me, everything is in my phone. All my appointments. I set alarms at intervals because if I have an alarm that tells me I have an appointment in an hour...I'll forget the alarm ever went off and STILL forget the appointment. So, 2 hours...1 hour... and when I have to leave.

Lists, lists, and more lists. Elizabeth Sparham-Brouse from Ontario, agrees with me. She also openly asks everyone to remind her of things without being ashamed. And Susan Bibbins of Boston Mass makes sure to put these lists, not just anywhere, but in places she is sure to see them.

Gin Note: It is OKAY to tell people.. I've got the memory of a concussed goldfish. Remind me again what I was saying/doing.

Anna Kehoe Murphy from Albequerque New Mexico keeps a pill organizer and has a husband who will remind her to charge her phone.

Linda Jervis uses a key station; a place where the keys to her car goes right on the door so she never loses them. (Boy do I need to do that!)

Like Anna, Linda uses a pill organizer to take medications and that is a habit we ALL need to get in to. This is VITAL because of how dangerous skipping meds can be and even more dangerous when we over take them.

I usually use my phone alarm, once a week to remind me to refill my pill organizer and I don't shut off my alarm until I have the organizer in my hand and I'm hovering over the bottles.

Gloria from Michigan talked about having multiple calendars and date books, having an hour a night to coordinate all of them, make sure that wherever she was that day and wrote down on one, it would be in all, and after she is done writing in them, she puts them in the respective places immediately. One in her car, one in her home and one in her purse.

Teresa sent me a message telling me about how she writes down questions she has for doctors so she doesn't forget to ask anything. Likewise with business she writes down questions, or points she wants to make at meetings.

Joanna talked to me about having two or three egg timers on her stove, set at different minutes so if she forgets she's cooking and walks away, she is brought right back in time to save dinner.

After burning several dinners, I think this is a method I'm going to employ.

Bobbi Jo Youngs Stephenson of New York tries to keep her mind sharp just like I do, with puzzles and reading. (In my case I do a lot of writing and vocabulary work too as Fibro Fog makes me forget words I used to type often. Sometimes I'll get a word in my brain and over use it while writing. It drives me batty!)

There are so many ways in which we can fight the fog...we just have to get cell phone alarms or routines up and running so we can remember to do the things we need to do to remember. Haha! Try to make sense out of THAT! I dare ya.

I'd like to thank the ladies who responded to me in Facebook for the great advice, and I hope some of you found something that you could implement to help yourself out.

As always, My Friends, best wishes for those 98% days and a meal that isn't burnt!Gin

Sunday, April 12, 2009

Today there are many people who are celebrating Spring. Whether it is Easter or just the beauty of life or the inspiration behind the rebirth of Nature.

So I've been holding onto this interview for the perfect day to post it. A spiritual ritual deal for me, to show appreciation for what inspires me.

I don't know this woman nearly as much as I wish but I can tell you that the interactions I have had with her have always managed to inspire me towards better days. I think about what she has gone through and it makes me want to walk beside her if for no other reason than to absorb some of her strength just by sharing her space.

Life is what you make of it! Sometimes we have to fight for every scrap of happiness with the sadness pouring down on us. ...It seems impossible, but this woman is proof that it can be done.

My friends, allow me to introduce you to Jody Wallace. May you find her answers to my questions as inspiring as I.

Tell a little of your life prior to your Fibromyalgia diagnosis:

I had a great life before fibro. Pretty close to Leave it to Beaver except my Mom never wore pearls and dresses to dinner and my Dad was much more hands on and low key. Don't remember everything - lost a lot of memory from the encephalitis, but the basics. Born 1953, Milwaukee, WI 1 st child. Actually 1st grandchild too, so I was probably pretty spoiled until my brother was born in 1956. Lived in a great home in the suburbs - lots of kids to play with a ravine and woods right in the neighborhood. We could walk to school if we wanted, although during the winter we usually caught the school bus. Grades K-8 @ Bayside School, 3.5 yrs @ Nicolet High, then a semester @ UWM(Milwaukee). 2 years @ UW Madison mostly being a hippy, not going to classes alot and finally flunking out. Finally went back to UWM after 2 years of marriage and got a liberal arts degree in Comparative Literature. Finished 2 months before I had Jason. Lived w/then married my high school boy friend. Was verbally and physically abused by him. Had Jason 4 years later and realized as he got closer to 1 yr that I didn't want him to think that this was how woman should be treated. [I]got some spine, called my Mom while my husband was at work and she came and got Jason and myself. We then lived my parents through the divorce (after getting a restraining order). Met William on a blind date when Jason was 2.5 yrs old. Fell instantly and passionately in love (if he had known he would have run the other way as fast as he could). He didn't & we got married when Jason was 5 and the 3 of us went on a 3 week honeymoon camping in various national Parks. It was the start of early trips to mountains.Activities at that time were : skiing (snow and water), hiking, swimming, reading, quilting, doing anything that was in the mountains. During my childhood my family had gone to CO every Christmas and Easter vacations to ski. My grandmother owned a lake cottage 1/2 way between Milw. and Madison, spent a lot of time there, also at summer camps as I grew older. BTW; I had Pre-Ecplampsia: during my pregnancy and was hospitalized for 3 weeks starting 1/20. they decided that they couldn't wait any longer and decided to induce labor on 2/9. Jason was born 2/10/79 1 full month premature, but weighing 5lbs 16 oz. so it was really good he came when he did. This could be a secondary cause for the fibro, but I really don't think so.

What event or malady led to your diagnosis:

[I] don't know how far back & detailed you want me to go, so for right now, I'll do the abbreviated version. 24 years ago, my family went to Mexico for Christmas vacation. We went with my parents, William, Jason (age 6ish). I had a bad cold on the way down. the last thing I remember is getting in a limo (my parents surprise) for the ride to Chicago. Don't remember the plane ride or anything else until I woke up in an intensive care unit at the Humana hospital in Mexico City 3 weeks later. My family has pieced together what happened for me: We got down to Ixtapa had some fun days, then I insisted on walking into town w/Wm - about 2 miles - they believe I got sun stroke - I have no idea but, really can't imagine that...The next day, I felt lousy from the cold & stayed in bed all day. That night, Wm woke my parents up and said that he couldn't get me to wake up & he though i had a very high fever. They did all they could cool towels and bath etc. In the am they called a Dr. Luckily there was also a Mexican Dr. staying at the complex with her (also Dr.) father. She kept coming to see me and eventually they arranged a fight for life to the Humana Hospital in Mexico City where they were on staff. The night that I arrived at the hospital, the Dr.'s told Wm & my parents that IF I lived through the night, I would most likely be a vegetable. Anyway they finally diagnosed Viral Encephalitis and treated me accordingly. Wm barely left my bedside unless it was to spend some time w/Jason. He says that he talked and sang to me the entire time. Thank goodness my parents were there to take care of Jason. My 1st real memory was waking up & seeing Jason being held up a the window ( My Dad was taking him back to Milw. so Dad could work and Jason go back to school). They finally moved me to a private room and about a week later they decided I was well enough to go home. 2 days later I was back in a hospital in Milw, for another 2 days probably for just being exhausted.I was home and in bed for about another 3 weeks gaining strength. I was SO skinny that everyone kept bringing me sweets - now I have the opposite problem!

Tell of the impact your diagnosis had on your familial and marital relationships:

This is interesting since I didn't think that the actual diagnosis, coming so long after the encephalitis made much of an impact on anyone, especially since for years it was pretty mild. So, today I asked William and my son Jason and they put me straight. They said there isn't a day that goes by that they don't worry about me; especially days that are like today, where I am in constant & obvious pain. William being around more has a daily impact on my fibro life. He calls me several times a day especially on days he knows that I am doing something very physical, just to tell me he loves me and that if I feel up to it, he will give me a back rub or a foot rub or just hold me. He also urges me to nap, doesn't care if the house is clean, laundry done etc. Jason, now that he has experienced the pain of major depression and attempted suicide has also become especially good about helping around the house (he and his wife are staying with us for several months until his depression is more under control). My daughter-in-law also helps when she can and will offer to bring me tea and/or chocolate or whatever i need.My parents have worried about me non-stop since Mexico. They are always willing to go shopping for me or run whatever errands I need. My Mom also helps me get exercise, water walking in their apartment complex indoor pool. Something I probably wouldn't do if it weren't for her.So, I guess that the impact it has had on my family is much more then I recognized. Now I feel really bummed. I really thought I put on a pretty good show.

The moment you knew you hit rock bottom:

Actually the moment I hit rock bottom was in the last several months when Jason "came out of the closet" and told us about his many fights w/depression/cutting and attempted suicide. I have never been in such pain both physical and emotional. Especially now, with the 4 of us and 3 big dogs living in a space under 1200 sq. feet, things get a bit close now and then. I am in this weird netherworld of trying to be upbeat and always there for Jason and Coey (his wife). I have taken on the extra burden of washing and organizing their clothes (we have so far brought over 20, 33 gal. trash bags full of laundry over and have not even scratched the surface of their bedroom or extra room). They are definitely stage 3 hoarders . while this is obviously not the most important thing that needs to be taken care of in their life, it needs to be addressed b4 they can move back to their own apt. Besides that I have increased many of my bills because their are now 4 people living here, constant laundry being done and they eat about 1/2 again as much as Wm & I do, so the grocery bills are more then triple what it use to be. Of course, along with the need for extra cash, we have had a basic cut off from the largest single source of income for Wm. (He does a lot of work for Milw. County, when they run over their budget, which they did this year in early July, they don't pay their bill until after Jan. 1st. This year because they are waiting for federal $$$, they haven't even begun processing the paper work yet and can't say when checks will be going out.)Some place out there is somewhere between $25K & $35K, but we have no idea when it will be distributed. Of course since my work is tied in closely with the housing market, we've been slow too. Enter the bill collectors. What's a little more stress in the life of a Fibro sufferer.

Tell of your rise to the challenge of Fibromyalgia:

I don't honestly know that I have risen to the challenge of Fibro as much as fought it tooth and nail. I totally believe that your attitude each day drives the kind of day you will have. I have to be an optimist because if I wasn't I would never move out of bed.

Tell us of your life now with your relationship be it a good relationship with your family or romantically.

What I have every day [with William] is a total love affair. He is my best friend. Even if he doesn't understand what I'm going through, he is there beside me, helping me, encouraging me, some times laughing at me. The biggest regret I have is that the physical part of our relationship has declined so much. He is even understanding about that, and if a good night kiss is all that I can manage, then that's fine by him - at least he makes me believe it is.

I would like to thank Jody, from the bottom of my heart and all the way to the top of it, for sharing her touching...and sometimes scary...story with us.

I hope what people get from this interview is that it is possible, regardless of what is thrown at you, to survive and fight. Forget about what came before and how it went wrong, and work on what you have now, or want to have in the future.

Relationships can crumble, your health can deteriorate, but with the right kind of determination and positive outlook, you can change your world and find your personal William.

All my best to Jody and William.

I realize that I have just published some very intimate details about Jody and her circumstances and yet my own is still shrouded in shadows. My friends, I will tell you all about my journey, but today was a day for me to celebrate the life of someone who has touched mine! I hope she has done the same for you.

Saturday, April 11, 2009

Happy Spring Time! Whether you celebrate Easter, or the Spring Equinox or the myriad other holidays around this time, I'm wishing you the very best. Because sometimes, in this time of Nature's rebirth, some of us are miserable!

Allergies are creeping in, making migraines easier to get and yesterday I saw the Spring's first mosquito here in Michigan. And I was the victor, Rawr! Feel my wrath!

So my subject today is to keep smiling through the changes in temperature and the typical worsening of symptoms. It is not going to be easy, my friends, as we all know but as I'm fond of saying lately: "This too shall pass."

It is only too easy to let our Fibro get us down but look through the list of supplements I've provided over the last few weeks and find something extra to help you fight it. Fatigue? There are plenty of energy supplements. Stuffy with allergies? Clean out your nose two or three times a day with a saline solution. It really does help to alleviate that bunched feeling in your nasal passages. Skin itching? I recommend getting an over-the-counter Eczema lotion that can help give your nails a break. Let me know what is wrong and I will scour my resources to see what we can come up with.

Through this bad patch, we have to fight more aggressively to get out our higher percentage days. You should see my nightstand table. Alavert (the strongest allergy med my body can kinda tolerate), my nose solution, my eczema bottle of lotion, my CryoDerm MSM topical pain reliever, Butalbital in case my migraines get too bad...a plastic bag...in case my migraine gets too bad, and a roll of toilet paper to blow my nose constantly. And that isn't including the vast amounts of vitamin bottles.

Oh yes... I am battling and not doing too bad this year, because through it all I am smiling, and that is what we all must do.

It will also help with those around you this holiday! When they see you smile, they will think you feel better.

Remember, it is okay if people take the stance "But you look just fine so you must feel fine". Sometimes ignorance is bliss to our families. We don't have to prove to anyone that we're sick. Be who you are. If you're hunched in pain, fine, you need to be and that is okay.. if you're in pain but walking with your head up and a smile on your face, it is okay that only YOU know just how brave and strong you are.

Well...you and all of us who suffer. It is a shame some of us do not have people who understand our condition fully in our lives. I have to tell you, one of my favorite moments lately was when I met a woman who I admitted I had Fibro to and she said, "and yet you're here with a smile on your face and keeping your pain in. That is such a huge accomplishment".

That is the kind of encouragement we all need. Recognition about what we have, and how well we are doing just to be out and about. The more respect we get the better we feel and the easier it is to keep the smile up front and the pain in back.

So this is me telling you that I am PROUD of those of you who come to the blog and read the advice and the supplements and use what you can every day to get out of bed and put a smile on for your husband, your children, your parents, your friends.

YOU are my inspiration, my army of positive fighters who push themselves every day. Your letters, your messages, your love and sometimes, yes even your anger, push me to encourage you. It's a very good circle to be in.

Enjoy the season start, my friends, and do so with a beautiful smile on your face.

Tuesday, April 7, 2009

I've heard a lot of stories from friends and strangers alike that has distressed me.

I talk often about staying positive and upbeat, which is a challenge when we have Fibromyalgia. The constant spikes of pain, fatigue, random strange symptoms...through all of that it takes a lot of strength to smile and push on. There are some days where we just can't push through it. We have a bad day and we crawl into bed, lament and cry and hope for a reboot of our system that has us feeling better come the next day.

Sometimes we have to break engagements. During flare-ups we sometimes break a lot more. It makes it hard to maintain relationships of any sort.

Friends stop calling because they're tired of being told "I'm not feeling up to it today". Family gets mad because maybe you're not as reliable as you once were. Spouses get mad...because you change, future dreams have to be lost and replaced and that doesn't always go over well.

Unfortunately, we're all human. Spouses are not infallible and they don't always take their vows literal. They love you, but as you were, not as what you've become. With Fibromyalgia, our personalities can change. Depression can bring us down and shape us into unhappy, bitter people if we're not careful.

There aren't many men or women who can handle constant negativity all the time. Which is why you hear me "preach" about being positive often.

I'm not 100% positive all the time. I get angry and mad. I'm human and that's what humans do. But I'm more positive than negative and the more bad something is the more determined I am to find the good in it.

I have Fibromyalgia and it is unfun. But I have a new appreciation for good days, life, and the world around me. I have a determination to become more than what I was to make every day a mission. Before I knew I had Fibro, I didn't have that. I just thought I was lazy and a complainer. Maybe it was normal to feel pain and I was just a big wuss.

I have Fibromyalgia, but I'm not dying from it, I'm living with it.

These positive thoughts can give you new goals, and these new goals can give you a healthier perception and disposition. A healthier disposition can only be a good thing.

If you've lost a spouse or a family members support or a friend, I'm not lying the blame at your feet. I want to make that very...very clear. I have zero respect for spouses who did not go the extra mile to try to help before they gave up, or friends who get mad and stop calling because you can't be there when THEY need you. The same with family members who roll their eyes every time someone talks about you and your condition.

There is no way in hell I am defending these types of turn-about supporters. However, I think it is our responsibility to recognize where we can fall short in these relationships and become better, healthier-minded people.

Fibromates don't always know when we're acting differently. We live in a world of pain and snap without realizing it often. So let me put some thoughts out there. Maybe they'll help.

-Try to keep track of your reactions to people. Are you getting an attitude at specific times of the day? When your pain is at its worse or right after a pain spike? Knowing when you get cranky can help you to better avoid an argument or make you more mindful of what you say at these times.

- Are you on medication that has mood swing side-effects that might enhance your irritation. Is there another alternative you can try? Or something that will off set the cranky-factor? Are you on a withdrawal from Narcotics? Knowing what is going on with your medication and why you feel the way you do (i.e. wanting to rip someone's arm off and beat them with it) can help you maintain control over your temper (to a degree).

-Get in the habit of apologizing and explaining. When you jump on someone. Say a boyfriend or girlfriend and you know you're wrong, don't just walk away mad. Explain. Even if you're still ticked off and screaming. "I know I'm being irrational right now but this is out of my control so if you could just give me some time I won't kill you!" Not that I've uh...said that or anything. But I have found that when I take just a second to let my boyfriend know that I know I'm being irrational it makes him feel better and he is more able to chalk it up to Fibro than think I'm just being mean. Later, once the wave of anger passes, I talk to him more calmly and apologize for the mood swing.

-Take part of the blame. "My Fibro made me do it" isn't always going to fly with the guy....or gal. Take some responsibility. "I get so tired and cranky and I don't always handle it well. I hope you know that I don't mean to drive you so crazy." Your other half or friend or family already know you have Fibro. When you say your Fibro did it all the time, they just start thinking it is an excuse you use to hide behind. You actually lose ground. So yes.. Fibro makes you cranky but you're the one they want to hear an apology from.

-Show that you are actively trying to take care of yourself. Vitamins are good for this too. It's a show of health consciousness that your friends/family/spouse need from you. When I lost the respect and support of my husband, I think a big part of it had to do with the lack of effort on my part. I was in pain! I was rolling around wanting to catch a break, complaining a lot, laying in bed a lot, getting a ton of headaches and we had no idea what was wrong with me. My doctors just treated me for migraines and told me to relax. That's what I did. And I did it too well. Eventually, he lost respect and we've been separated ever since. So no matter how horrible you feel, how bad and how hard it is to push...show some effort. Even if it is just swallowing a Vitamin D every day or some magnesium.

-No one likes a negative Nancy. Not even negative Nancies. We can't be positive all the time. Myself included. Some of my views and posts are not positive even though that is what I tout. There is a lot of negative about Fibromyalgia. (Conflicting opinions on healthcare, the constant pain and misconceptions, bad advice from those who are "Fibro Experts") I'm a big fan of being negative on negativity. LOL. It often gets me the most hate mail. HOWEVER, if you hear yourself saying what you can't do, what will never happen, and that you're trying the best you can (in defense) often and several times a day...you may be growing into a negative nancy. Don't panic! Just try and insert a little bit of positivity. "This too, shall pass."

We all can do something to better ourselves. Fibromates and Normals alike. There needs to be changes on BOTH sides in any relationship. If you can't do something because it hurts you, well the Normals in your life have to change and come to terms with that.

You're not the only one that will have to go through change and sometimes, that draws those we truly love and want to spend time with ... away from us. It is a horrible outcome...but one that if it happens, we have to face down and rise up again!!

Losing a husband or a best friend or a family member puts you in a state of mourning. And mourning takes time to heal. I would never suggest that the next day you get out of bed and sing with the birds near your window. Take some time to heal but always, always in the back of your head you have to tell yourself that you can make another life. A happy one, once the pain begins to dull.

It can happen, and in the next few weeks I plan to prove it to you with my story, and the story of a few others who suffered a devastating loss, only to recover and reclaim happiness.

As always, My Friends, I care so much about you and dearly hope you can take comfort and find inspiration in what you have read and will read here.

Sunday, April 5, 2009

I received an email asking for support group advice since I "don't seem to care much for them" "Are there any that you do like?" LOL You know who you are. ::hugs:: It's a good question.

There are often times where you will witness me encouraging people not to listen to advice on their support groups for reasons discussed about one or two posts down. But that doesn't mean I don't think they have merit. They do.

So today I'm going to make a few notes on my views of Fibro groups, how to join them, how to get what you need out of them, and when to avoid them.

-I do not suggest joining every group of Fibro"mates" out there. (A little side note. I am not a big fan of the term Fibromites. It makes me laugh every time. Sounds like a bunch of fleas or something so I'm going with Fibromates. -grin-) It is good to want to be supportive of our condition and the people who suffer from it but at the same time, you need a safe haven: A place to go to relate to others. If you spread yourself too thin between groups you will find it is an all day job of keeping up with every social network you've set up.

-Set up camp. Trust is a huge factor when choosing your favorite support group or groups (I suggest no more than two) so join many...lurk for a while, see if you trust the advice that is being given. (The advice I'm referring to is medical. Personal opinion advice really depends on your personal views. If you're a religious person, you might want to choose groups that are heavy into prayer. If you're not singularly focused on religious aspects, but science, choose a group that is statistic and fact heavy.)

-After you've found a primary group, begin posting so you can become a fixture in that community.

-If your views come under personal attack, you can always change groups. That doesn't mean you should leave of course. Many of you know I'm constantly butting heads with someone and that doesn't scare me off. For me, I try to be diplomatic, recognize what I could have done differently, and apologize if I truly feel I was off kilter. HOWEVER, not everyone is able to be diplomatic and Fibromates are ofttimes hot-headed and unreasonable. (Come on! You know we can be ultra-sensitive. It's part of what Fibro is!) My point is, don't get discouraged by disagreeing with someone. A support group is meant to relate and relax. If you find you cannot do that, move on or lay low for a few days.

-The best function of a support group is to relate to others. Fibro patients have a lot of crazy things happen to our bodies. Some of them are more common than others. (Eye twitching, itchy skin, painful skin patches, red bumps, blurry vision, nasal drip...etc.) The uncommon ones are what we need the groups for "Does anyone have...". Posting when you've had the same experience or something similar is a gift you give the person inquiring. I'm sure we've all felt the relief that comes with someone saying "yes, I've had that and this is what I've done about it". This is what support groups are for.

-Secondary to relating is the "venting". It needs to be done but for me...I hate this aspect of the groups. Others find it invaluable and I can't blame them. But let me explain why I hate it so much. Let's say you're having a bad day. You've got so much pain you just want to scream so you go on a rant about how your husband(or someone) doesn't help you when you're feeling down, you can barely move, you hate your life, and sometimes you just want to scream and wait for it to all be over. The responding posts can go either way but OFTEN it goes down hill. Fibro patients are frustrated! We hate that we have this and there are times where we just want to ...GRRRRRRRR. So as I was saying, often the responses aren't... "Hey, you'll get through this, we're here for you, we know how you feel."

Instead it becomes. I know how you feel. I hate my life, I wonder why I have to have this, I don't understand what I could have done to deserve the constant pain. I wake up and can't move, can't get out of bed, my mother hates me, my dog pees on me...

Okay you can probably sense my agitation building. For me this is the OPPOSITE of help. I've jumped in on 3-4 threads like this asking everyone to reel it in. Always to extreme backlash so lately I've stopped doing it to give people a little break but something tells me, I'll get mad and do it again. And the reason I get mad is that this isn't helping anyone! It's okay to rant but wow! People need support groups to feel good, to relate and loooooong threads of everyone lamenting about how much their life sucks is frightening. Not just to me who sees all of these women and men give up but...too the recently diagnosed who read this and panic.

-So...for me, My Friends, I suggest avoiding these threads when you notice them pop up. It's okay to be supportive but the negativity will truly bring you down. I also suggest you listen with a careful ear to medical advice and alternative medicine inventions. Take note of people who make good comments, cautious comments, comment often, and are in general nice to others. Create a small list of those you trust instead of listening to all.

There's my advice! And truly, this is only my version. I'm sure many would disagree with me on a few points but for me, support groups in small doses! LOL

Friday, April 3, 2009

Noooo. You won't be seeing Marijuana on this list. Not yet anyway. Considering it hasn't passed many states' laws just yet and is still frowned upon in other countries...I think I will strive to keep my reputation such as it is and stick with herbs I know are legal. At least in the states.

Herbal Remedies can be just as good if not better than some of the chemical treatments Fibro Sufferers are on. But as always, ask your doctor about going off any medication to try something holistic. There are several different types of herbal medication that doesn't play well with chemicals.

For example: St. John's Wort should not be taken with an anti-depressant.

You all understand this by now, I know. But I'm always going to mention it. Check with your doctor, RA, nutritionist, Dietitian...grandma Ester...whoever you need to, to feel comfortable taking these drugs.

The list I'm about to give you comes from a mixture of sources. Each one seems to quote the other one with one word different in some cases so I'm going to list the resources and let the lawyers fight it out if they want to. LOL My backside is covered!

Prescription For Nutritional Healing by Phyllis Balch, CNCNatural Treatments for Fibromyalgia on About.comTreatment for Fibromyalgia on HolisticOnline.comThe Holistic Herbal Directory by Penelope Ody

I apologize if any of the information is repeated, as it is hard to follow so many sources...throw in a little bit of Fibro Fog and it's a bit of a messy list. LOL

St. John's wort - a natural antidepressant and influences the adrenal gland hormones to help relieve stress. St. John's wort affects nerves and is effective for sharp, shooting nerve pains. It also has antiviral properties. (Caution: Do not take if you are taking conventional antidepressants.) Choose a standardized extract containing 0.3 percent hypericin and take 300 milligrams three times daily.

Siberian ginseng - an energizing herb that can help resolve the fatigue associated with fibromyalgia. Choose a standardized extract containing 0.5 percent eleutheroside E and take 100 milligrams twice daily, one-half hour before breakfast and lunch. After two weeks, you can gradually increase the dosage as needed. After six weeks, take one week off, then take the herb for another six weeks.

Turmeric - to reduce pain and inflammation. Take 400 to 500 milligrams three times daily.

Cayenne, echinacea, goldenseal, astralagus, myrrh and chaparral - boost the immune system and improve circulation. Combine them as a tea or tincture. It may be helpful to mix it with juice for better taste.

Calendula taken orally in high doses has a positive effect in reversing symptoms of fibromyalgia.

A combination of burdock, slippery elm, sheep sorrel and Turkish rhubarb was shown good results in improving fibromyalgia.

Garlic is useful for detoxification and to enhance immune system function. Take 5,000 mcg of standardized allicin three times daily. Kyolic, aged garlic is preferred.

Ginkgo biloba improves circulation and brain function.

Devil's claw root is a natural anti- inflammatory used to treat rheumatic disorders. Take one 400 mg devil's claw root tablet daily. Studies suggest that taking the herb for at least six weeks can significantly improve the movement of arthritic joints and reduce swelling. (pg 151 of The Holistic Herbal Directory) Devil's claw can also be used as a bitter digestive stimulant for liver and gall-bladder disorders. CAUTIONS: Avoid in pregnancy as it is believed to stimulate uterine contractions; avoid in cases of gastric or duodenal ulcer as well!!

Willow bark has anti-inflammatory properties and works as a painkiller. The plant is used from relieving pain, reducing fever, and is helpful for rheumatism, gout, arthritis, feverish chills, and general headaches. CAUTION: Avoid in cases of salicylate allergy.

Dong quai is good for fleeting muscle and joint pains, especially if they are worse in damp conditions. Take 1 capsule daily. For women only.

Licorice root - supports the glandular system and acts in the body like cortisone, but without the harmful side-effects. CAUTION: If overused, licorice can elevate blood pressure. Do not use this herb on a daily basis for more than seven days in a row. Avoid all together if you have HBP.

Topical applications of cayenne (capsicum) powder mixed with wintergreen oil can help relieve muscle pain. Cayenne contains capsaicin, a substance that appears to inhibit the release of neurotransmitters responsible for communicating pain sensations. Use 1 part cayenne powder to 3 parts wintergreen oil. Cayenne can also be taken orally, in capsule form.

Pine-bark and grape-seed extracts are natural anti-inflammatories that help to ease pain. Take 50 milligrams of either two to three times daily.

Ginger Tea. Ginger is a good alternative to aspirin to relieve minor aches and pains. Steep 1 teaspoon of the grated root in 8 ounces of hot water for 10 minutes. Strain. Add honey for taste, if you like. Alternatively, take 1,000 to 2,000 milligrams of powdered ginger a day in capsule form with food. Gin Note: Honey, as any kind of sugar, has been reported to aggravate Fibromyalgia so use sparingly.

Curly dock - a cleansing herb suitable for chronic skin problems and arthritic complaints. It helps to clear toxins and acts as a gentle stimulant for the liver and kidneys. It is also laxative and stimulates bile flow, but is rather gentler than strong purgatives such as rhubarb, so it is one of the better remedies for use in pregnancy. Curly dock can also be used as a blood tonic in anemia and is a lymphatic cleanser, useful for swollen glands. It is an astringent remedy and me be used for wounds. CAUTION: Avoid regular and prolonged use in pregnancy and while breastfeeding.

If anyone is currently on, or trying any of these herbal remedies, I'd love to hear from you at FibroHelper@gmail.com

You all know how much I love, and live for, giving advice. Most of it is unsolicited on facebook comments or in private instant messages. I always try to be informative and clear in my suggestions. Also, I hope you all know that I always want you to double check what I've said with doctor's, nutritionists, dietitians, RA's, and Neuros.

A person not in any of these fields has to give advice carefully and thoroughly and always.. ALWAYS make sure to say something like...ask your doctor first or...check with a pharmacist about the side effects to your drugs, and so on.

Now before any of you worry about me, My Friends, don't. This isn't a "whoops Gin" moment. Newp...this is about support groups. Once again, the support group striketh!

Bad bad bad advice!

On a few loops and groups I've noticed a trend of "I've had Fibro forever so I know all about it" attitudes that have caused a bit of trouble.

Now I could let Evil Gin out to play and tear into these people, but last time I did that the backlash was harder to fix than if I just let the bad advice go. The comments that came at me was: "She was just trying to be helpful and you attacked her. How can you claim to be positive and be so negative?" People just don't realize the repercussions of bad advice and what it can do to someone. Yet I was the bad guy for pointing out the error.

Ohhhh let me tell you, Friends. It is a good thing Evil Gin was kept at bay by the constraints of the Internet, for if this had been a personal confrontation, Fibro Gin might have been Incarcerated Gin.

LOL

The truth is, there is one thing I can't stand, and that is obvious, horrid, HARMFUL advice. We've all given bad advice before I'm sure. Even if it was unintentional and something as simple as misunderstanding what the person was actually asking or meaning.

Hey, it happens.

I personally have butted in on pain rant conversations to try and pep people up and it has not gone well. Ha!

But here's the thing...drawing on your own experiences is fine, but you should say "this is what XYZ does to me and the reaction I had to it, maybe you're experiencing an allergic reaction" if you want to be cautious you should add a "check with your doctor". What ISN'T Okay is pretending that you know everything about a drug, or a supplement, when ALL you have to reference is your personal experience! "That is an allergic reaction. Stop your medications immediately!" That is not okay!

The situation was anti-depressants.

You all know I am not a fan and I do not react well to them but I never, NEVER tell people to stop taking their medication unless they consult their doctor and I usually only suggest that if they are complaining about the side effects. (Meaning my personal preference against them does not influence my advice) I also make it clear that the "quitting process" should be gradual and not abrupt just in case they don't consult their doctor (which is extremely unwise and harmful to the doctor/patient relationship).

This...person...told a Fibro Patient that her anti-depressant was causing the bumps on her legs and to toss her medication now. She then began to list all of the frightening things that could go wrong with this "allergic" reaction and urged the Sufferer to "throw away" her unused meds.

That was about two weeks ago I'm guessing(the email was a little unclear on time frame) as the Sufferer has now come to me after this ...person... claims that throwing away the meds is what her doctor told HER to do so that is why she told this Sufferer to do it. And she can't figure out WHY the sufferer is having breathing problems and heart palps and panic attacks and migraine headaches.

So, as I was saying, the Sufferer comes to me. Her doctor is angry with her, her RA who prescribed the drug is angry with her and is booking appts. 2 months in advance and the Sufferer is in so much pain she can't get out of bed. Not only has her flare-up worsened but she has taken a big step back from her relationship with her doctors, AND she's going through a withdrawal.

Now, my friends, before you think she was silly to listen to this...person...it is important that we keep a few things in mind. New Fibromyalgia patients are more inclined to listen to their peers than doctors. Especially if they have a history or misdiagnosis.

Fibro Fog can also make us a little unclear and irrational, especially if we have strange symptoms. There are also some in the elder crowd that don't understand the Internet as well as the younger crowds and when they get advice from someone claiming to be a "lifetime FMS Sufferer/expert" they might be inclined to listen and follow the "expert" advice.

Factor all of that together and you have one scared woman who thinks her medications are killing her.

Now she is asking me what to do. If she had come to me before I would have given her better, positive advice that wouldn't have sent her into a freak-out session that had her throwing out her meds!

But she didn't. And I'm not a doctor, nor a nurse, and my hands are tied.

I've given her all the home remedies for pain etc. The MSM trick I've found and the whole bit but here I am, frustrated...angry and yet a little hopeful that this woman's disaster might save someone else from listening to bad advice just by me ranting about it.

I can talk about it here because this isn't where she found me. Blogs are a little out of her realm right now. The second incident of bad advice I can't talk much about since the chances are good the victim and the ...person... might be watching. Luckily, that one wasn't as serious.

This post is a little big Rant-a-doodle and I'm sorry for that.

I just really need to stress to all of us the importance of the advice we give. Myself included! It is never good to be complacent and to fall into a pattern that could have us harming someone with our indifference or lack of attention to detail.

Fibro is a vicious syndrome that baffles even the professionals so wrong advice is tooooo easy to give. Knowing this we should all be more careful in what we say...and in what we listen to.

As always, My Friends, I have your best interest in my heart....truly.I hate the thought of any of you falling victim to bad advice!Stick with who you trust, even if it isn't me!

Fibro Helper Gin

To clarify, I am not a doctor or nurse or nutritionist. I'm not selling any products or taking any donations. I simply have Fibro and a lot of knowledge gleaned by lots of research. Fibromyalgia is supposedly going to be with me until the day I die, so that is how long I will fight it.

The only rules of Fibro Fight Club are: No one will talk down to others and no one will rant about how much their life sucks. There are plenty of places to have self-pity moments (and we all get them!) but not here.